Talking to children about dementia

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I guess you could say we are very lucky with our little family. The boy’s have 3 grandparents (just my dad missing) and still have both Great Grandads, on Adam’s side. They don’t see them terribly often because they live a bit further away and have lives of their own, but they do see them at least a few times a year, and their grandparents pretty often.

Lately Adam’s Grandad on his father’s side, who the boys see relatively frequently because he comes to stay with Adam’s parents, hasn’t been 100%. He’s generally fit and well but I think the winter has taken a toll and he is no spring chicken. This topic crossed up because he sent us a couple of Christmas cards and cheques for the children, explaining that he was very sorry he didn’t have the usual lovely Christmas cards, and that Toby hadn’t received a birthday cheque, but he had been unwell. Of course the material side of things is irrelevant to myself and Adam (the kids are too young to understand it anyway) but it did mean that I mentioned to Adam that his Grandad had put in the note he hadn’t been too good of late, so it might be an idea to take a trip up and see him with his Dad.

All the while I forgot the golden rule of parenting: Little ears listen well.

A voice suddenly sprung up, “Mummy, is my Grandpa poorly? I heard Grandma say he wasn’t very well and he’s forgetting things… is he going to die?” Great. At the moment every time someone is ill, the first question is ‘Are they going to die?’ after another child had a grandparent pass away at school. The truth is, no, Grandpa isn’t going to pass away (we hope) any time soon, but as with most people in his late 80s/early 90s, he is slowing down and (so my mother in law informs us) beginning to suffer with dementia. The boys adore Grandpa, and I think this is a topic that requires a bit of sensitivity. I remember my own Grandparents starting to forget my birthdays or, when my Grandad was in hospital one time, an elderly gentleman next to him, mistaking me for his daughter. It was a really odd thing to happen when I was 13, and I can’t imagine it happening to a child of Reuben’s age or Toby’s age. How do you explain to a child that dementia is often a part of what happens when relatives get older?

Here are a few tips:

  • It is NOT taboo.

Never make dementia taboo. Never. It isn’t, it happens, so put your big girl pants on and talk about it. You might want to say to your children something like, ‘Well, Grandma/Grandpa doesn’t remember that because when you get older, your brain has soooooo much information in it, it’s sometimes hard to remember it all.’ Never try to laugh it off, or shush your child’s questions, just answer them as honestly as you can. It just isn’t something to be embarrassed by or ashamed of, and feeling that way only contributes to making others feel the stress.

  • Be honest.

There is nothing worse for a child than feeling an atmosphere and thinking its because of something they have done. People worry and stress terribly when an adult develops dementia or even Alzheimer’s, there are so many questions to be answered that we often forget to explain to children what is going on. Why is everyone beginning to worry? They aren’t daft and they will only feel betrayed if they later learn you kept something from them, so for heaven’s sake, be honest. Tell them that the adult in question has been unwell and that it is a condition called XYZ, that they can’t help it, but that they are still the same person that loves them.

  • Don’t be afraid to laugh, cry or whatever you think is right to do.

I know that might seem strange to say laugh, but the truth is, if you can find the humour in it, then you will be able to put your child at ease much more. I’m not suggesting laughing AT the person, I’m suggesting that you find the funny in the situations that arise. Does Grandpa call Little Timmy a range of different names, or the same name as the old dog? It’s not as depressing if you see the humour. If that isn’t appropriate and you feel sad, then thats fine. Let your emotions show through and discuss them with your child.

  • Break it down, use examples.

“You know how Grandad went to bed with his hat on, that is because he didn’t realise what he was doing!” Is one of the examples given by the Alzheimer’s Society, because it is something that would stand out as odd behaviour, and its ok to talk about that. If the person who has been diagnosed with dementia can talk to the child about it then all the better. It’s also a good time to mention to your children that sometimes they will see Grandpa/Grandma using new puzzles to help combat the effects of dementia, which are often advised by doctors. Encourage them to get involved if they want to.

I hope if you find yourself in a position where you want to get talking to children about dementia this will help you.

Harriet x

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